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trying to understand. if you have a child on oxygen...

Posted by on Nov. 17, 2013 at 10:36 PM
  • 17 Replies
Do you have a system in place for electrical outages. I ask because twin boys with muscular dystrophy died here last Tuesday. There was a power outage and while there isn't on official cause of death yet it's suspected it's because they were on ventilators and couldn't breathe without power. Apparently their mom was wonderful and sacrificed everything for those boys including her marriage.
I just don't understand why there wasn't a back up of some sort for when the electricity went off.
That poor mom. I can't imagine what she's going through losing them both at once.
Is this normal not to have a back up?

Update
More info has been released. Boys had been in a care home for 2 years because mom was declared unfit to care for them (so much for them being her life). The respiratory therapist stopped by during the outage and heard both alarms sounding. Mom was very drunk and said they had been sounding for 3 days. They had 6 hour back up batteries. Therapist called 911. It's still unclear how the boys died, why they were returned to her, and if she will be charged with manslaughter.
by on Nov. 17, 2013 at 10:36 PM
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Replies (1-10):
Irislady17
by Bronze Member on Nov. 17, 2013 at 10:52 PM
That is horrible I can't imagine loosing one of my children let alone 2.
My son is on o2 but his comes in a large tank and does not require electricity to run.
However when he was on a vent there was a battery backup. And I was forever greatfull there was, the power did go out once when he was on it.
I can't imagine running such important equipment with out some sort of battery backup.
letstalk747
by Joy on Nov. 17, 2013 at 10:58 PM

OMG , i wonder why there was no backup

saphiraka
by Member on Nov. 17, 2013 at 11:02 PM

When my youngest was on o2 and more recently my dad was here on o2.. We had back up bottles of oxygen.. and they would delvier more if necessary but the big bottle was good for about 16-24 hours.. and we had the small portables that were good for 2-3 hours.

Momof4AEMW
by Silver Member on Nov. 17, 2013 at 11:07 PM
1 mom liked this

Oh my goodness, that is horrible!  That poor mother!

I do not have oxygen in the home now, but my triplets came home on it; two for 7 months and one for over 2 years.  I would think it is more the ventilator that required plug electricity, not the oxygen itself.  Our oxygen was the large independent tanks that were not electric.  You would just switch them out every couple of days when they ran out.  My kids were also on apnea monitors though that did require electricity to run as the rechargeable battery would only last so long.  There was no back up if the power was out and the battery ran out.  However, we signed up with our power company our kid's equipment so if there were outages, we were on the top of the list for repairs before regular homes.  I would think the mother could have had some kind of similar arrangement.  The vent would certainly run on electric and qualify.  There is a water oxygen source or something that uses it too.  We didn't have it so I do not remember the details, but again should have qualified for emergency list for repairs.  I'm so sad for that mother. 

DJAKoala
by on Nov. 17, 2013 at 11:14 PM
Wow that is so sad. I couldn't' even imagine losing two children. I have a 7 year old son that needs oxygen on occasion. His is used off a large tank with portable ones for mobility. His system does not require electricity or batteries. He does have nebulizer machines one battery and one electric. We do have a back up generator for major power outages.
Mipsy
by Chelle on Nov. 17, 2013 at 11:15 PM
You can call the electrical company and get put down as needing power asap. I believe they will provide generators if they can't get your power on quickly enough and its life threatening that you depend on it. We are on that list to get turned on first when there's an outage
JasonsMom2007
by Member on Nov. 17, 2013 at 11:39 PM

It was a major outage about 90,000 homes across 3 counties.  There wasn't a way to repair theirs first since it was all tied into the same thing.  Not a day one would expect an outage either.  No storms or anything like that.  Our cell phones even went down!  It was so strange.


Quoting Momof4AEMW:

Oh my goodness, that is horrible!  That poor mother!

I do not have oxygen in the home now, but my triplets came home on it; two for 7 months and one for over 2 years.  I would think it is more the ventilator that required plug electricity, not the oxygen itself.  Our oxygen was the large independent tanks that were not electric.  You would just switch them out every couple of days when they ran out.  My kids were also on apnea monitors though that did require electricity to run as the rechargeable battery would only last so long.  There was no back up if the power was out and the battery ran out.  However, we signed up with our power company our kid's equipment so if there were outages, we were on the top of the list for repairs before regular homes.  I would think the mother could have had some kind of similar arrangement.  The vent would certainly run on electric and qualify.  There is a water oxygen source or something that uses it too.  We didn't have it so I do not remember the details, but again should have qualified for emergency list for repairs.  I'm so sad for that mother. 




Being a full-time mother is one of the highest salaried jobs in my field, since the payment is pure love.  ~Mildred B. Vermont
Linagma03
by Gold Member on Nov. 18, 2013 at 12:00 AM

 That is so sad. I don't have any experience with o2 or ventalators but my youngest was in the national guard and when there was a major outage there was a list of people that they delivered generators to and the electric company did the same. I don't know any more than that about it. I don't know what I'd do if something like that happened.

mandee1503
by Amanda on Nov. 18, 2013 at 1:30 AM
You can call your power company and ask to be enrolled in medline. It may vary in title from company to company but if your child has any sort of life saving equipment they cannot shut off your power regardless of how late your payments are. And also it's suppose to guarantee your house higher up on the list to have power restored. Idk about a generator, but most equipment should have a battery backup and everything should stay fully charged when you aren't using it.

I'm sorry to hear about those boys. So unnecessary.
darbyakeep45
by Darby on Nov. 18, 2013 at 4:56 AM

I'm so sorry to hear this...how sad.  

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